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you know, i didn't know that it was supposed to train the blood vessels. that is very interesting!! i don't know how i do off it, i was just glad to get my bp down, any of it in my system made it skyrocket. The best for me has been florinef/mestinon! Madeline

HI I took midodrine for a year and a half or so, for a while it worked well, I was feeling very hopeful with the med. Then one day my bloop pressure shot up,and I was sitting up all the time I had it in my system, which I was warned about, but no matter how much we adjusted my meds, my bp kept going up. I eventually had to stop taking it Has anyone else had to stop taking midodrine b/c of their bp? Has anyone had it go up and found a way to keep it under control? Thanks Madeline

HI! I have a lot of skin problems, but don't have alot of $$$ to spend on treating it. I have been looking for some new producst and came across this website mountainroseherbs.com They look like they have some great organic products that aren't to expensive!! I was wondering if anyone has tried them or knows anything about them? I can't fidn reveiws Can't wait to hear Madeline

HEllo! Hello!!! I have ALL of these problems with stockings I'm hoping to remeber all your questions, so lets see, I do wear my stockings year round, when I go in the heat, I make sure that I am well hydrated and have had enough electrolytes, but then I will bring ice packs in the cooler with my water and a little towel. When I get hot I wrap the towel around the ice pack and either place it under my legs, on the back of my neck or wherever I'm hot! I helps some. O gosh, i get terrible in grown hairs, and have wondered if it's related to the stockings, they hurt but I've never done anything about it. As far as itching goes sometimes I have that problem ,it used to be ALOT worse, but I've gotten most of it under control. I make sure to moisturize well, but notice that I get athletes foot alot and that is a big problem. it may be more so then dryness, at least for me it was. I guess its athletes leg really, I get it on my feet, under my knees and sparatic patches on my legs. For that I use the medicated cream, wash my feet and legs really well everyday with felsnaptha soap, and use tea tree oil at night! Hope this helps, o as for what to wear, I wear them under pants, and I wear them with shorts, even though its awkward I suck it up b.c it helps so much. Since I was doing better last summer I got out more and noticed that since I'm so shot my legs don't touch the floor, that puts pressure on my legs and causes me to feel worse. So what I decided to do was wear wedges or heels all the time and for that reason I felt a little funny with shorts, so I wore skirts when I went out,and will probably do that this summer as well! one again hope this helps,~Madeline p.s. have you thought about having someone help you get the stockings on? my mom helped me when I was at my weakest! Has any one notice carpal tunnel develop for putting the stockings on and off?

HI Hanna! I don't think that I have a mitochondrial problem, but was more curious for seeing it discussed. I have a friend witha mitochondrial disorder but she doesn't like to talk about it, I though this might be a way to learn about it! ttyl Madeline

I see that a lot of ppl have posted about having mitocondrial disorders. I'm not sure if I have ever been tested, how do you know if you have mito disease? Thanx Madeline

HI! I have the exact same problem and it is horrible. I've been bad and havn't been walking like I should, but I intend to start up this spring! Anyways, the mst I've ever walked for is 10 minutes everyday a few years ago. The only way I got to this was starting out samll, major baby step, like start out with less than a minute and over the weeks gradually work up. the progress is painfully slow and fristrating, but it will be easier on your body! The problem I'm having right now is that florinef makes you gain weight and I would like to get rid of a couple of pounds. No more then 5, but idk how? b/c I can't do that much intense exercise Any ideas? <3 Madeline

HEY! This is a strange question but a problem I've had for a long time. I get told to do ab and core strengthening exerises to help push the blood up, but everytime I do ( and this has gone of for years) I get really constipated It's VERY uncmfortable, and I don't know what to do, should I just stop the exercises? thanx, Madeline

HI! SO, latily I have been struggling with this friend of mine that I met a few years ago through my physical therapist. She moved a while ago so we only talk online and on the phone. She also, has a chronic illness and has been through an awful lot herself, but has professed to be pracitcally normal the past couple of years. I am happy that she has found stuff that has helped her illness, but I still struggle ALOT every single day and she just doesn't get it. It's starting to really wear on me and I don't know what to tell her. She gives me a hard time for using a wheelchair, saying I should learn to walk even if it makes me tired, thats what she did, but doesn't realize I FAINT! She thinks that I should be able to go to college full time, just b.c she can and criticzes my choice to hold off a little and attempt on line class b4 I decide to go. Plus, she says its pathetic that I am aware of my illness and that I talk about it, I'll say i've been "resting" instead of "hanging out" so what I am an honest person. Shes also says that I need to forget I have a disease and push through it. What she doesn't get is that my body literally gives out and I go into shock, her reaction is "Yea so?" Has anyone had this problem ? Or any idea on how to deal with it without starting a fight? Thanx Madeline

HI All! I have a couple of questions.... I usually take a bath right before I go to bed to help me fall asleep, it seems to help and I have done it for at least 6 years now, but latily I have been so tired I don't think I need to do that to fall asleep. However, in a lot of ways it fits well into my routine, b.c I put my stockings on when I first wake up and don't take them off until right beofre my bath at night. SO, my question is what time of day do ppl normal bathe and how do you handle the stocking issue? They seem to be harder to get on after you have been wet. Also, what are your night routines that help you fall asleep? Lastly, what time of day do ppl normally exercise? I am trying to bring some walking into my program, but am not sure if I should stack it by doing it all in the Am with rest in between or a little in the AM and then a little in the afternoon? Any adivce would help Madeline

O goodness yes! I've had POTS for 9 years and can't rememebr ever waking up feeling awake I have to talk myslef out of bed in the am, and most days it takes almost a half anhour if not 45 mintues Actually this morning I had a water squirter next to my bed and sprayed myself in the face, surprsingly woke me up I'm planning on trying it again tomorrow!! Any tips on getting up on the AM would help take care Madeline

I'll try to think of answers to all the questions over the next couple of days, but the first thing that comes to mind as far as going to college is concerned: W/ on line classes and such possible less stringent deadlines. I know of a university in VA where the distance learning program gives you all the material for that semester up front and then you have 12 weeks to complete it on your own terms. It makes you have to be very responsible, yet very good for when you aren't feelin well!! Peace, Madeline

Leigh, idk if you can take it while pregnant, but I do know that the GI upset and loose stools will probably go away in a few weeks, at least they did for me! But then again I only take 60 mg in the AM. I should talk to my Dr about taking more, does anyone know if that amount of mestinon is ok to take if you are EXTREMELY med sensitive and a small person? Best wishes, Madeline

I am taking 60mg in the morning. I have read that you can take more though, I will have to ask my dr. I started out on a very small dose, like 10mg I think. It was SO small that I had to take the liquid and worked over to 60 mg over maybe 3 months. I wouldn't say it gave me a ton more energy but I think that it's helped me create almost a platform where I can work with what I have and see some results instead of continous setbacks, if that makes sense. Maybe I should say the thing it helped with most is that I recover faster from doing things! Good luck Madeline

HI Zip, the combination of florinfd and mestinon, have been the only combination of meds that I have made progress on, I"ve been on them for a year and a half now, and am stronger then I have been since I got sick 9 years ago!!! Best of Luck Madeline

HI! I don't know why mostly girls are affected. But I do know that with Midodrine you have to watch out for high blood pressure. I had to stop taking it b/c no matter how little I took my bp would soar! It was very frustrating, but other than that it is an easy med to take!! As for your eyes, I used to have that problem and found out that I needed extensive vision therapy. I went to therapy twice a week for it, for almost 2 years. My eyes couldn't converge (cross) no matter how hard I tried, that was one of the reasons I would get so many headacheas and get so nauseas! Also, one of my eyes alignd higher then the other. Maybe you should have an eye dr check your eyes to see if you need therapy? Hope this helps Madeline

For many, many years, probably about 6-7, I had the same problem. Simply sitting up for an hour would wipe me out for a week. It was incredibly frustrating b/c I could never do anything. My dr started me on using a TENNS machine to stimulate the muscles in my legs like I was exercising. Also, he had me wear compression stockings and pack my legs in ice for 20 minutes 3 times a day. A while after I started that I decided that I wanted to be able to sit up some, so I started sitting up for 5 minutes every single day, and that wore me out. After a week, I would sit up for 6 minutes every day and gradually increased it every week. through time and a lot of hard work I am able to do things for a few hours at a time, but then I ned to rest. I can exercise for about 15 minutes a day and I ride horses for a half an hour once a week. I can't tell you why you are so worn out from exercise, except that maybe you are trying to do to much to soon? When my dr tried to have me go to a physical therapist, I had that problem. I've had better results very slowly increasing my activity Hope this helps Madeline

I have POTS for just over 9 years now. I haven't noticed a rapid progression though, I've gradually gotten better. Mine improvement was through a lot of had work and conditioning though. I started out just sitting up for 5 minutes everyday, after I did that for a week, I spent a week at 6 minutes and so on and so forth. I hope this helps, Pm me if you need anything Madeline

Hey! I'm thinking that I would like to be a private music instructor and hoefully be able to work part time. I would like to go to school to get a degree in music education or music. However, like alot of you can't attend school. I have spent days searching on line to find a school offering a music degree through distance learning and can't find anything I've run out of names of colleges, does anyone know of any schools with comprehensive distance learning programs? Thanks Madeline

Ok, so I have too many funny stories about my chair to list, but I'll tell my two favorite. Like a year after I got sick, I was about 13 and we were at a flea market on vacation. This old man had all these bottles of stuff he was trying to sell and so when we walked past he asked what was wrong. My mo sort of explained and then he asked if he could spray my legs with eucalyptis oil, b/c they cured him from the diseases he got in WW2! WE didn't know what to do, I was tired and just looked at my mom, then he grabbed my hand, and started spraying. He's like, "Now you will be cured' as we were leaving my hands started burning and I was like we have to get to the car and wipe it off, and we ran into a clow who stopped us. He said we had to wait there so he could make me a shopping hat, b/c I didn't look happy enough, I was tired and wanted to get out of there. Once the clown gave me the hat I just told my cousin to run and push me to the car. This next one happened last year, my mom and I were at the mall getting my dad's Christmas present, only we couldn't find it in the store. So we had to ask for help, and of course we get a doofy sales guy that talks to people like they are deaf. So he's helping us and my mo goes down an aisle I can't fit through, she just left me there sitting with him. He says loudly, "So what did you do to yourself." Completely not thinking about it, I said straightfaced, "Nothing" his eyes got all big and he backed away, Then my mom said, "she has a comprimised cardiovasculer system" The thing I didn't DO anyhting to myself. After that he was like afraid of me. LOL.

HI! I have a tendancy to be self-comcious in the chair too, and have often wanted to cry after running into someone I knew. Things have gotten better with the self-conciousness though, I just decded to focus on the face that without it I would never be able to go out. One thing I do notice is that the helpfulness of people depends on who I am with. If I am with one of my parents people aren't very thoughtful, but if I am with a friend, people will gladly open doors and clear pathways. I find it interesting. I thought the place I would be least stared at was NYC, seeing as there as SO many people there and many are strange, but I thought the were more rude there. They make no bones about stepping right in front of you and stopping to look at something.

hmmm.... you think that they are afraid? That's odd, I have been using one sick I got sick when I was 12 and I find people stare at me ALOT!. I hate it. They can stare so much that my cousin wants to yell , "TAKE A PICTURE IT LASTS LONGER!" my mom thinks they stare b/c I look normal, but I really have no idea why they stare? Depending on my mood, I do different things. Sometimes, I smile, but normally, if you stare back they will look away!! haha

HI! Are you taking florinef? I gained a lot of weight on florinef, like 20 pounds in a couple of months. As we've played with my meds, stopping the florinef I would loose it just as fast. start it and it would come back. Right now, I'm on my full dose and am only about 5-8 pounds heavier, I think thats b/c I have had some more activity, but the bottem line is that gaining weight just STINKS!

HEY ya'll! Has anyone taken a college course or two while getting SSI? By no means do I mean full time school, just a class here and there. Is that allowed? Do they take it away if you start anytype of school? Anyone had experience? Madeline

I"ve been trying to find alot out about the reserach that is going on at the Baker Inmstitute in Australia. It's very hard to fond any information, or anything that might possibly "demethlyate" us. Looking through posts from awhile back someone posted asking if it was possible the new medication Decitabine, a hypomethylator, they are using to treat some cancers would help us. Does anyone know anything about this medication? Has anyone ever tried it? Does anybody know of anything else that would do the job? Just curious ~Madeline